Hi Stacy, you did not mention the baby's growth through all of this.   I 
would be curious on how all the measurements are been.
From your post there seems to be a message from this baby since birth that  
there are problems.
Is there a feeding team at the hospital near her?  This feeding  team should 
include an LC, PT/OT, and a nutritionist.  If this is not  possible, to have 
this baby seen by a PT/OT who specializes in babies.
Good luck and keep us posted.
Ann Perry, RN IBCLC
Boston, MA  

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